Lyme disease is the world’s most common tick-borne illness, with a vast range of symptoms affecting any organ in the body, including muscles and joints, the heart, gastro-intestinal system and neurological system

Although the disease is rare in Australia, with NSW Health saying, “there is little evidence that it occurs”, the International Journal of General Medicine has described Australian cases and “identified a much larger tick-borne disease burden within the Australian community than hitherto reported”.

In June 2012, Ms Tubnor started to experience headaches, neck pain, anxiety and nausea that led her on a five-month search for the root of the problem.

She saw several doctors and went though multiple medical tests, specialist visits and months of physiotherapy, and never had Lyme disease suggested as the cause.

“On several occasions when I mentioned the possibility, I was met with the same phrase that every other Aussie like me has encountered: ‘There is no Lyme in Australia’,” she said.

“I had to source my own Lyme Literate Doctor through a support group in California, USA, and arrange and fund for my blood to be sent to a lab in America for testing.”

Her test results returned positive for Lyme and several co-infections, and she began treatment for chronic Lyme disease.

Before treatment she had difficulty walking, was sometimes crippled or unable use her hands because of pain, and suffered problems including a painful 12-week headache, vision problems, anxiety, depression and loss of arm mobility.

“My current major symptoms include insomnia, mental fog and confusion, fatigue, painful joints, headaches, neck pain, blurry vision, gastro upsets, nausea, sore feet and legs, sore arms, the list goes on,” she said.

“I am unable to work, I am unable to function normally for a full day, I am unable to do my own housework, unable to drive longer than 15 minutes mostly.

“On top of this and the ignorance of the Australian Government and medical profession, this disease is well known for the slogan ‘But you don’t look sick,’ so trying to explain to people just why your life has been so affected is a task in itself. This strips you of your self-confidence and makes you feel very alone and alienated.”

Ms Tubnor’s treatment currently involves 30 daily tablets, two weekly intramuscular injections, a restricted diet, complete rest, massive detoxing, blood tests and a trip to a Sydney doctor every four weeks, costing her hundreds of dollars every month.

“I will be on this level of treatment until my symptoms start to disappear,” she said.

“While I will never completely be rid of the bacteria, I am hopeful that ongoing treatment and a very healthy diet and low stress lifestyle will mean I can manage it forever.”

She said the most frustrating thing was that the bacteria transmitted by ticks could be beaten if people demanded that their doctors give them a three-week course of antibiotics as soon as they were bitten.

“I would like every Australian to know my story so that it may prevent or help someone like me to avoid the pain and suffering that I have endured,” she said.

“I believe there are people out there who have been misdiagnosed and who are suffering           still.”